Stakeholders' Perceptions and Information Needs Regarding Research Medical Donation

Abstract

Context. Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs. Objectives. The objective of this study was to generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities. Methods. We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in eight teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised two groups. Each cancer separately had two groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes. Results. A total of 45 people (13 clinicians, 24 patients, eight caregivers) participated in the groups. The themes identified were as follows: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD. Conclusion. Patients, families, and cancer clinicians have generally low knowledge of RMD but, upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.

Postmortem Tissue Donation: Giving Families the Ability to Choose

“…[1][2][3] However, several real and perceived barriers exist, which have limited the rate of autopsy including discrepancies between clinician, patient, and parental views. 4,5 To identify and address these barriers, a consensus conference of advocates of children who died of brain cancer was held in December 2018 at the Children's Hospital of Philadelphia. Major barriers to obtaining autopsy were identified with an emerging theme that a cultural shift is urgently required where families and patients with terminal brain cancers are uniformly provided with the option of postmortem donation.…”

Reviving the Autopsy for Modern Cancer Evolution Research

“…In other cases, best efforts are promised to donors who pass away during shorter operating hours of a programme [ 25 ]. Similar to any medical research involving human subjects, research autopsy programmes run under a strict ethical code, with informed consent at the heart of their work [ 26 ] and are guided and made possible by generous patients and their families, strongly wishing to contribute to future cancer research [ 27 , 28 , 29 ]. Furthermore, as the programme involves deceased individuals, it must also adhere to local coroner’s and human tissue acts [ 30 , 31 ].…”